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Pray for Greyson K

$24,767 of $50,000 goal

Raised by 172 people in 19 months
Created January 15, 2018
Fundraising team
On July 3, 2017, my sister, Amanda Kapes, of Drums Pennsylvania, found out she was pregnant for the first time and she was ecstatic! In October, she found out she was having a little boy and named him Greyson Carter. Later that month, Greyson was diagnosed with a complex congenital heart defect, which will require open heart surgery within the first year of his life. This condtion is common in children with Trisomy 21 (Down Syndrome). This finding resulted in the need for genetic testing which revealed that Greyson was also at high risk for having Down Syndrome. 

While Greyson was not due to be born until March 16th, on the morning of January 5th, Amanda noticed that Greyson was not actively kicking as usual. She was referred to her local OB doctor who determined Greyson was in distress. Amanda was emergently transferred by ambulance from Wilkes Barre General Hospital to Geisinger Medical Center for further evaluation.  

Once there, Greyson was initially stable on the fetal monitor but at approximately 6:30PM, he went into severe fetal distress and his heart rate plummeted. Amanda was immediately taken to the operating room for an emergency C-section under general anesthesia. Greyson was delivered in under one minute and was born at 6:37 PM weighing only 2lb 9oz and measuring 12 inches long. 

The neonatologist and medical team were very optimistic about Greyson's outlook as a 30 week old preemie. Amanda tolerated the surgery well but unfortunately she was not able to witness Greyson's birth or see him for the first time until the following morning. 

The next morning, January 6th, Greyson's labwork came back showing critical numbers, specifically his white blood cell count which should have been 10,000 was 136,000. The neonatologist informed us that this was caused by Transient Myeloproliferative Disorder (TMD), a form of life-threatening leukemia found in infants with Down Syndrome. The excessive cells had caused liver damage as well as blood clots in his heart and liver. Greyson needed immediate chemotherapy but this treatment was only available at the Children's Hospital of Philadelphia (CHOP). The doctors felt time was of the essence and the sooner they could transfer him, the better his chances of survival. 

Late that night in the bitter cold with gusty winds, Greyson was life-flighted to CHOP in an attempt to save his life. Amanda was discharged prior to 24 hours post op surgery to try to get to her son. The three hour car ride without pain medicine made for an impossible journey. With the help of family nearby, Amanda and my mom arrived at CHOP the next morning. 

Since then, Greyson's journey has been marked by miracle upon miracle. God has seen him through so much. He has sustained his life and is healing him day by day. We give God all the glory, thanks, and praise. My nephew has a long road ahead, but he is a little fighter and every day he amazes us! 

Amanda and my mom are staying at the Sheraton hotel through Ronald McDonald House Charities, so they can be with Greyson as much as possible. Amanda has taken extended leave from work and it is projected Greyson will remain in hospital care for months. 

Anything you are able to bless Greyson and Amanda with would be so helpful to them. More than anything else though, we ask for your prayers for Greyson for healing and strength. 

The address where Greyson’s momma, Amanda and Greyson’s Grandma, Ann are staying at is: Sheraton Philadelphia University City Hotel 3549 Chestnut St, Philadelphia, PA 19140

Updates on Greyson can be found on Facebook at: https://www.facebook.com/Pray-For-Greyson-K-430763394005960/

 #PrayForGreysonK

Our family greatly thanks you for your love and support through this trying time. God Bless.

Video:
 https://www.facebook.com/rachel.kapes/posts/10215454063691848
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Wednesday April 4

This evening, our precious Greyson entered into the presence and joy of our Lord and Savior Jesus Christ. He fought so very hard,
but now he is free from all suffering. No more tubes, no more needles, no more blood tests, no more pain. He has entered into the eternal rest prepared for God's own, a sinless state of perfection in which he will be forever blessed

Our hearts are broken to be parted from our little one so soon, but we also rejoice that Greyson is in the Everlasting Arms. He now sees God face to face and walks with Him, unhampered by a frail body. We do not mourn as those who have no hope. Greyson is now a glorified human soul in the presence of the most glorious God, a perfect reflection of His faithful love and infinite grace. In this steadfast truth, we rejoice.

Greyson fulfilled all the days God purposed for him. Through his short life, Greyson was used mightily of God. So many people messaged us to tell us how he united a community, how he helped strengthen their walk with the Lord, their prayer life, their love for God. Truly the ways of our Lord are unsearchable.

Thank you all for walking through this journey with us. Your prayers have lifted us countless times and in countless ways. May Christ be praised in all things.

And Job said: “Naked I came from my mother’s womb, And naked shall I return there. The Lord giveth, and the Lord taketh away; Blessed be the name of the Lord .” In all this Job did not sin nor charge God with wrong.. Job 1:21‭-‬22
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Wednesday April 4
500 PM

Blessed be the name of the Lord <3

We apologize for no updates recently.
Greyson's condition continues to decline.
Amanda has been holding him for several hours. We just do not know how long Greyson will be with us.

We do know Jesus our blessed Lord and
Savior is waiting to receive him into glory.
What a beautiful assurance that is to our
heavy hearts. We are comforted by God Himself.

As you pray, let us continue to ask for a healing miracle. Let us remember to thank and praise God for a life that touched so many hearts and lives. This precious little baby boy is so loved by so many; people who've never met us or him. Our hearts rejoice over it. Only God could do such a wondrous thing.

Now I saw a new heaven and a new earth, for the first heaven and the first earth had passed away. Also there was no more sea. Then I, John, saw the holy city, New Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband.

And I heard a loud voice from heaven saying, “Behold, the tabernacle of God is with men, and He will dwell with them, and they shall be His people. God Himself will be with them and be their God. And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.”
Revelation 21:1‭-‬4
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Tuesday April 3
915 PM

Blessed be the name of the Lord. Greyson is still with us, thank you Lord Jesus. Every day with our sweet little lamb is a gift.

Today was incredibly hard. After his code, there was a long painful talk with his doctor. She told us they just do not have any more medical interventions to help Greyson.

Still, it is a very diffult decision to remove life support. In particularly hard after watching Greyson surivive so many obstacles where we were told he likely would not make it. Its one thing to make a decision like that for
an elderly parent. Its quite another to face making that kind of decision for your child.
For now, his vitals and numbers are relatively stable. So as we wait on the Lord, we will pray and plead for complete healing. He is able!

As you pray for Greyson for healing, please also lift up Amanda. She's broken hearted beyond words.

Thank you for lifting us up.

How precious is Your lovingkindness, O God! And the children of men take refuge in the shadow of Your wings. They drink their fill of the abundance of Your house; And You give them to drink of the river of Your delights. For with You is the fountain of life; In Your light we see light. O continue Your lovingkindness to those who know You, And Your righteousness to the upright in heart. Psalm 36:7‭-‬10..
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Sunday April 1
7:30 PM

We thank the Lord Jesus for a beautiful day with Greyson. He is a God full of grace and loving kindness!

We spent most of the day with our precious boy. Auntie Rachel was here too! It was so good to visit with her and Tim! Mommy held her sweet boy again for 3 hours this afternoon. He has been more alert the past two days and that is such a blessing. Every day is a gift!

Please pray for divine healing of his liver, heart, and lungs. Pray the team advances his feedings. The Lord has freely provided so much milk from Mommy and we want him to benefit from all of it! It's the best medicine he could have!

Please pray for his belly fluid to go down. The team does not want to keep tapping him. Its invasive, painful, an infection risk, and it reaccumulates. Pray earnestly that the Lord would cause his liver to function as He designed.

We will wait on the Lord expectantly to be able to bring Greyson home in His perfect timing.
Our prayer is that Christ will be greatly glorified in and through Greyson's life. He is able!

Thank you to all who hope and pray with us and follow our posts and love and care for all of us, especially Greyson.

My soul waiteth for the Lord more than they that watch for the morning: I say, more than they that watch for the morning. Psalm 130:6.

And we know that all things work together for good to those who love God, to those who are the called according to His purpose.
Romans 8:28.
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$24,767 of $50,000 goal

Raised by 172 people in 19 months
Created January 15, 2018
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